Time for an update on Baby J’s big Marfan appointments.

I finally got a copy of his complete echocardiogram report in the mail. You can imagine how I felt to learn that he has a patent foramen ovale, which is a small hole in the heart. Now, I am familiar with PFOs and they are extremely common and basically harmless. I’m not worried about the PFO. It is likely that it’ll close on its own by J’s next echo, anyway. What I am mad about is that I learned of it on his echo report. This is really something his cardiologist should have mentioned to me at the echo appointment itself. I also discovered that I was correct about J’s aortic root measurement (I read it as I watched the tech do his echo). It was not even close to the number the cardiologist made up. Argh. J’s root is currently on the border between normal and enlarged. I’m not overly concerned, especially since he had a large growth spurt shortly after the echo, but again: I should have been told the actual measurement and not some number the cardiologist pulled out of his head to try to pacify me into not asking questions.

Anyway, outside of that, J had his first ophthalmology appointment last week. I was much more nervous about this visit as I noticed that he isn’t tracking or focusing. J wasn’t a huge fan of the lights in his eyes, as you can see below.

I’ll tell you what I was a fan of though: his doctor! She is fantastic! At first she began to explain Marfan vision to me in terms of the basics. When I explained my background and volunteer work with the NMF though, she began to talk to me more like a peer, which I really appreciated. And if that wasn’t great enough, turns out she was a protege of THE Marfan ophthalmologist, so she really knows Marfan eyes.

It’s really amazing what they can tell about eyes so early. Turns out J’s lenses are intact for now (though the doctor couldn’t get a good look at his bottom lenses, which is normal for his age), which is terrific. He is a bit nearsighted, but doesn’t need glasses yet. I was right too, in that Baby J is delayed in his ability to focus his sight on an object/track objects. Although his doctor normally sees her patients with Marfan every 4 months, we have an appt. to go back in 8 weeks if he doesn’t catch up in the meanwhile.

No more Marfan appointments for J until his geneticist appointment at the beginning of April.